We were in my hometown over the weekend for Farmer’s Day. We arrived Friday afternoon and made our way downtown to find my Dad. I knew just where he would be he’s there every Farmer’s Day weekend. My godparents were there and I loved seeing both of them. We got supper at a local booth, watched some singing, Graham wrangled two carnival games out of us and won a small stuffed shark. Then it was time to go back to my parent’s house. One of the carnival workers stopped us as we were walking back and said he wanted to give something to Grace. He proceeded to pull down from the booth a large pink unicorn with lots of sparkles. It was perfect for Grace, I wondered how he could just look at her and know! I asked if he was sure, not quite believing he would just give away such a large stuffed animal. We held it in front of Grace, she totally checked it out, and we thanked him. Graham volunteered to carry it back to my mom and dad’s house. This from a boy who 30 seconds earlier was complaining he was too tired to make the walk.

As we walked Kevin and Grace got further and further ahead of us. I considered asking a question all while knowing I would be wandering into potentially dangerous territory but Graham had been oohing and ahhing over the unicorn. He had made no comparison to the much smaller and very plain in comparison shark he’d had to work to win. I wondered why.

“Why do you think that man gave the unicorn to Grace?” I asked.

“Because she’s in a wheelchair.” He said simply.

“Is that the only reason? I asked prodding further.

“She can’t play the games Mom.” End of conversation.

He started talking about other things. But then a few minutes later said, “That was really nice of that man to give this unicorn to Grace.” He carried the unicorn happily all the way. He’d just taken it all in stride.

The next day he was not near as generous with his sister. I was doing something with her and he wanted me to be with him. Now that he’s learned to write he began to write me notes and pass them to me as I fed Grace. One read “Stop Now.” The other just read “No”. Not being able to leave her – because sometimes I just can’t leave her – and him needing or wanting attention from me that I can’t give makes me feel the heavy weight of mom guilt like few other things.

Later that day there was a point when I had to bow out of the fun because Grace needed some time out of her chair, air conditioning, and rest. Graham had a choice at this point. He could either come with me and Grace or he could stay downtown riding rides with his aunt, uncle, and cousins. I was not surprised in the least when he chose them. Although I knew he’d be fine part of me hated to leave him, hated to miss him experiencing Farmer’s Day and his cousins, and part of me felt guilty because he’s my responsibility. Watching Graham with his cousins, the banter, the love, even the arguing is sad in a way and fills me with a regret that he doesn’t have typical siblings but I also love to see him join in the fray and I’m so grateful for how my brother’s family embraces him.

There’s a part of me that hates that this is his reality. It’s not always people giving us pink unicorns. There aren’t always cousins to ease that we are choosing her over him. But it is our reality. We all make sacrifices. I can only hope that he knows how much he is loved and continue to embrace the pink unicorn moments. And for those times when he feels he’s being overlooked, I have to hope he can see that in a family you can’t always be first but by no means does that mean you are unloved.

National Sibling day was actually April 10th. I’m a little behind. I realized that day I didn’t have any fun old pictures of me with my siblings – I need to fix that next time I’m in Jesup. But I did have some pictures of Grace and Graham and so I put one out on Instagram. Believe it or not, sometimes it’s hard to get them both in the same frame. It also made me realize that I haven’t written about Grace and Graham lately.

They continue to evolve as brother and sister. Grace is a faithful taekwondo watcher, stealthy stealer of toys, and continues to drool at times on Graham’s belongings. For his part, Graham has developed a greater understanding of what it means to be Grace’s brother. The Friday before Easter when it was so cold Grace’s nurse left her hat and mittens at school. Her teacher went to find Graham in the after-school program and asked him to put the hat and mittens in his bag so that he could bring them home for her. It was the first thing he told me about when I came to pick him up. He was proud that Grace’s teacher had come looking for him.

There was a time when we left him for three days this winter to take Grace to Minnesota for doctor appointments. I wrote his kindergarten teacher the night before we were leaving to let her know he’d expressed some frustration at being left behind. She responded that he’d already told her and I was moved that he’d already enacted his own support team.

We have started attending a new church and as part of that, we’ve been taking a special needs parenting class. Grace and Graham are in the room down the hall from us those nights. The first night we took them Graham insisted that he have a magnet for Grace’s VNS in his pocket and that he had one of her chewy’s in his pocket. I was astounded.

My heart broke a little the day he told me that he missed our old church and wanted to go back there. I explained to him that maybe someday we could visit but right now we need a church that can better support Grace and that there’d be an opportunity to make new traditions this way. He simply said sadly. “OK, I get it”. But how could he?

And then I picture the two of them on our very cold spring break trip to St. Louis. We were at the zoo and had been checking out the penguins. I wanted to get Grace a stuffed penguin – she’s totally a fan. We, of course, walked out of the penguin house into the penguin gift shop. Graham knew we were buying a penguin for Grace and immediately went to work collecting penguins to show her so that she could pick. In the end, Grace got a penguin way bigger than what I imagined we’d come home with. But he showed us that she liked it best. He named the penguin Waddles.

He’s growing up so fast and sometimes Grace seems stuck. They sometimes are fine sitting side by side and they sometimes are not. Sometimes I can get them both in a picture and sometimes they want nothing to do with each other. We are getting a wheelchair van for Grace and although Graham wanted to help us pick it out he was ultimately ok with whatever was best for Grace as long it had a DVD player for him.

I love the two of them beyond what I can say. We’re working it out day by day. I’m determined that Graham will know we had some limits because of Grace but he will also know that Kevin and I pushed those limits as far as we could and that he was factored into every decision – because he is.

“I didn’t know Grace had a brother” I heard a teacher say as the four of us walked past in the hallway at school. Today was Meet the Teacher day. In my opinion, it’s madness – in an hour and a half, every kid in the building is technically supposed to find their room, meet their teacher, put away their supplies, and then be ready. You have exactly 2 minutes with each teacher to ask questions while they are trying to take care of everyone else there and for me, the whole thing just lacks personality. Graham was anxious, not sure of what was going on. Grace kept yawning. Kevin and I ran around trying to unload the four bags of supplies necessary in the places where we thought they should be.

Anyhow – that’s a blog for another day!

So, back to the teacher’s comment about Graham… it was really the tone of which it was said that caught me. I heard it as “Wow, Grace has a brother.” It’s not the first time I’ve heard the tone. It happens more than you might think. My impression is that a lot of people think maybe we are a bit crazy to have had a second child when Grace is so Grace.

I choose to think of it this way. Graham wasn’t an accident we had him on purpose. We waited to have him until we felt like Grace was stable so that we’d be able to be there for him like we wanted to. We had him because our family didn’t feel complete – we’d always talked about having two kids. Some days I think of Graham as a visible sign of our faith and optimism.

That’s not to say we weren’t scared when we had him. But we wanted him. We took a risk on him.

He’s stretched our parenting in different ways. He teaches us things that are quite frankly amazing and humbling.

I’m looking forward to finding out what school is like on the normal side of parenting. Even though Grace has been there I just have to imagine it will be different.

So this year, this one year Grace and Graham will be in the same school building. I’m anxious to see what this will be like for both of them. What will it mean for Grace to have a little brother in the building? And what will it mean for Graham to be Grace’s little brother?

One of the things I think Graham sacrifices as Grace’s brother is playing outside in winter. As noted several times before about Grace on the blog – she hates cold, and a cold windy day makes her incredibly unhappy. She complains and gives us looks like we are torturing her. Nonverbal communication at its finest!

I’m in charge of picking up Graham on my way home from work, and often I will hear other parents say things like “grab your boots so we can play outside tonight”. We hardly ever grab Graham’s boots because I know the likelihood of him going outside to play is slim. I hate that for him. The reality is that often times it’s dark before Kevin gets home and I can’t keep half of me inside with Grace and half of me outside with Graham.

This winter Graham has bemoaned several times the lack of snow. But this week it snowed! The first night Graham wanted to play in the snow so badly. I offered for him to go outside by himself, but he didn’t want to do that. So, we brought snow inside and he played with it at the kitchen table. We’ve done this a lot over the years. He gets cups and plastic food from the play kitchen so he can mold the snow into shapes. He also keeps plenty of sticks and rocks in a drawer in his room so he can add some natural elements to his snow sculptures. It’s not an ideal situation but it works.

But this week we had the good fortune of snow and the days being longer. So the second night we had snow Kevin was with Grace inside and Graham and I went outside to play in the snow. We did the normal things… snow angels, snowball fights, made tracks in the snow, found some icicles, went down the slide covered in snow. When a neighbor yelled out a greeting to us Graham happily yelled out “We are playing in the snow!!!” We went inside with wet boots and gloves and icicles in a bowl so Graham could do some experiments with them.

The third day it was over 50 degrees. We have no more snow. We played just in time!

Today Grace had surgery to lift her eyelids. They’ve been drooping, the right more than the left. Her brain and the muscles in her eyelids just weren’t working together. We were supposed to have the surgery done this summer, but if you’ve been reading along you know that this summer didn’t exactly go the way we planned.

We’d noticed almost two years ago that her eyes seemed a little more closed. We’ve been watching it with her eye doctor since then. We’ve watched her lift her head up less and less when she walks because she can’t see as well with her head up. We’ve watched her with her eye-gaze communication system. There are areas of the board she doesn’t look at as much, probably because she couldn’t lift her eyelids. We went through pictures from over the past few years with her ophthalmic plastic surgeon (still can’t believe she has a plastic surgeon on her team) and the progression was clear. It was time to do something about it.

The surgery was pretty quick – all the pre-op and post-op was what took time.

When I talked to the surgeon when it was all over he warned me that she would look rough for a few days. He told me there would be swelling, possible black eyes, and bloody tears. The only thing we can do is give pain meds, try and put ice over her eyes (not Grace’s favorite by any stretch of the imagination), keep her from rubbing her eyes too much (also not Grace’s favorite), and carefully wipe the bloody tears away to keep everything clean.

As they were putting in the IV this morning to give her anesthesia Grace looked me right in the eye. I promised her this was it – the last surgery we have planned.

We need this to be it. We all do. Months have gone by with us barely noticing. Graham yelled at me tonight for leaving him again. We were gone for 25 hours – and he had an absolute blast without us. Once he got over being mad he told me all about it. He needs us to not leave him. Grace needs to be in school. We need to be at work. The world is only forgiving of absence to a point.

I get that in the grand scheme of things this has been a small window of time. But this small window of time has beat us up a bit. Physically, emotionally, spiritually, we’ve taken some blows. How to recover isn’t quite as easy as ice and pain meds.

The nurse in pre-op today called Grace a tough cookie. I told her she had no idea how tough a cookie Grace is. The nurse in post op commented on Grace’s shirt. The word “Awesome” is printed over and over. “That’s a big statement for someone who’s gone through as much as she has,” he said.

“She never quits,” I told him. “She just keeps going.”

In the coming weeks (and maybe months) we’ll do our best to find our family some rest and recovery, so we can keep up.

Grace’s face will remind me of the need for rest the next few days I’m sure. When I put her to bed tonight I noticed the beginnings of what looks to be a black eye and I wiped up the bloody tears as carefully as I could.